Including People with Spinal Cord Injury in Research as Participants, Partners, and Personnel

Int. J. Environ. Res. Public Health, 2023 · DOI: 10.3390/ijerph20156466 · Published: July 28, 2023

Spinal Cord Injury Rehabilitation Disability

Simple Explanation

Individuals with disabilities are often left out of diversity and inclusion discussions. This paper summarizes recommendations to enhance the inclusion of people with disabilities in science and research, particularly in the spinal cord injury (SCI) field. The recommendations focus on updating the NIH mission statement, establishing an NIH Office of Disability Research, and addressing structural ableism within the NIH. The SCI research field can serve as an example for including people with disabilities as research participants. However, there is still progress to be made in including people with SCI as research partners and in the scientific workforce.

Study Duration

Not specified

Participants

Not specified

Evidence Level

Not specified

Key Findings

1
People with disabilities are significantly underrepresented in research and discussions on diversity, equity, inclusion, and accessibility.
2
The SCI research field has a strong history of including people with SCI as research participants, offering valuable lessons for other fields.
3
Inclusion of people with SCI in the scientific workforce lags behind their inclusion as research participants and partners.

Research Summary

The article addresses the underrepresentation of individuals with disabilities in research and the scientific workforce, focusing on recommendations from the NIH and contextualizing them for the spinal cord injury (SCI) research field. It highlights the importance of the social model of disability, universal design, accommodation, and modification in promoting inclusion. The paper emphasizes the need for systemic changes to address ableism and promote diversity, equity, inclusion, and accessibility for individuals living with SCI in all aspects of research.

Practical Implications

Enhance Research Practices

Researchers should adopt universal design principles, provide accommodations, and carefully consider modifications to ensure the inclusion of people with disabilities in research studies.

Promote Partnerships

Foster meaningful partnerships with people with lived experience of SCI throughout the entire research process, from identifying the problem to disseminating the results.

Address Workforce Barriers

Institutions should actively work to remove systemic and structural barriers that prevent people with SCI from entering and thriving in the scientific workforce, including addressing accessibility and attitudinal barriers.

Study Limitations

1
The paper is primarily a summary and contextualization of existing recommendations, rather than a presentation of original research findings.
2
Data on the inclusion of people with SCI in the scientific workforce are limited, making it difficult to fully assess the current state and progress.
3
The recommendations are primarily focused on the NIH and SCI research field, which may limit their direct applicability to other contexts.

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